Rare case from the UK

May 4, 2007

Dear Dr Conway,

I wrote to you about a year ago about a clinical setting that was definitely suggestive of HIV infection (both risk and chronology of (medically verified symptoms), but where anti-body and PCR DNA tests were negative. You suggested that I monitor my CD4 counts every six months or so to see whether they are in progressive decline.

Briefly, my CD4 count seemed to be declining by about 75 every six months (or 2-3%)which seemed to confirm my concerns. However, my recent CD4 counts showed a bounce back to much higher CD4 counts (though the percentage may have gone down slightly). I still have terrible problems with chronic/reoccuring aphthous ulcers on my posterior oropharyngeal wall (excruciating pain!) and I have extensive mucosal disease in the throat and all the sinuses.

The doctors remain baffled and nobody disagrees with the theoretical logic that a genotype resistance test could identify an atypical or mutated strain of HIV which other tests do not identify. [The PCR test relies on the genetic sequence of the primers it uses to be complimentary to the genetic sequences of the virus that is being detected. If there are certain kinds of mismatch, the virus will not be detected, and the test will not work. The resistance tests use different amplification primers to detect the virus,and thus may pick it up in rare cases where the other tests (including the viral load test) does not.] BUT will not do such a test because it is against their procedures. I have even had the comment: "Why don't you send a sample of your blood to Dr Conway".

I have mislaid the exact results, but will track these down and get back to you with them. In the meantime, I have two questions:

Could you do a standard genotype resistance test for me?

If an individual has CHRONIC HIV infection (i.e. none of these counts were done during the acute phase), would their CD4 counts always be in progressive decline (i.e. would it be a straight line going down on a graph) or is it possible to have blips on this line but with a downward trend over time? Hope this makes sense.

Response from Dr. Conway

This is an interesting situation. I would certainly repeat the conventional HIV antibody test as well as a DNA PCR test just to be sure. Although I am flattered that you would consider sending us a sample, I would encourage you to contact a local HIV research center to discuss your case with them, as I am certain they would be quite interested in your case and would be willing to consider additional tests in your circumstance. They may have a better idea than me about what tests could be most helpful at this point. I would also encourage you to continue to have an open mind and to consider the possibility that this may end up not being HIV infection at all.

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